I am only 3 weeks post vaginal hysterectomy and laparoscopic surgery removing everything including cervix. All went well however I’ve been suffering with insomnia and awful what I can only describe as nerve pain….it feels like my skin is crawling and it’s constantly burning and prickling all over constantly I can’t even rest as it’s driving me mad I feel like my teeth are on edge. Also in the night my feet start to throb with evil pins and needles they turn bright red and that goes half way up my calves. This is happening every night however the nerve pain is all over and constantly throughout the day and night.
I am only taking 1 paracetamol every 6 hours no other pain meds as they don’t touch this.
Any advice would be helpful as I’m losing my mind with no sleep but the nerve pain is taking me over 😭.
Thank you xx
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MyStar86
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I'm so sorry to hear about this it sounds awful. It might be worth ringing your surgeons secretary to ask for advice and also speaking to your gp for decent pain relief. Nerve pain and disturbances incldung pins and needles /burning sensations often do not respind to standrad pain killers. Amytriptyline is commonly prescribed for nerve pain and is effective for many people, so something like that night possibly help but it sounds like you need some reassurance about whether what you are experiencing is expected or if you need further investigation into whats going on. Certainly supporting you in getting some sleep is important as part of the healing process so I would also speak to your gp about that. I hope things improve for you soon x
Hi there, this all sounds like menopause symptoms. I had the same symptoms after my hysterectomy- pain, itchy/prickling skin and insomnia. I had no idea and thought it was linked to the surgery. Have you started HRT yet as that’s what you need?
It’s just awful in mmm devastated I did ok first 2 weeks then boom it’s gone awful and I’m a mess. I am on hrt the Lenzetto oestrogen spray as they said they had removed all the endo so I was ok to have that due to me also having pmdd. Does it take a while for hrt to actually help as I just can’t cope not sleeping I was already very Weak prior to surgery after having the bowel surgery only a matter of weeks before the hysterectomy and a previous endo surgery in august last year plus with the terrible bowel problems I’m only about 40kg and 5ft 6 so I just feel completely broken. Also my pain is no different after all these surgeries it’s only worse so I feel like I’ve made a massive mistake. It hasn’t helped that my dog died as well yesterday so I’m totally lost and confused. No sleeping is destroying me plus this prickling skin is unbearable on top of everything else my head is pounding and I feel suicidal with it all now it’s just too much I’ve been through so much to be left in a worse state than I started 😭. I’m so confused I just want someone to help me as I can feel myself going under xx
Bless you, I understand exactly how you feel and believe me it’s all down to not having enough oestrogen sweetie. It causes scary mental and physical symptoms and nobody warns us about it. I was exactly the same and I couldn’t believe how ill it makes you feel. I wasn’t sleeping, had severe anxiety plus overwhelming feelings of dread, doom and wanted to die. Please increase the dose of your lenzetto spray today as you need more oestrogen in your system. They prescribe the lowest dose and it just isn’t enough, especially when going through a surgical menopause. Try increasing and see how you feel. If you don’t feel any improvement at all after 3-4 days increase again. If you still feel unwell ask your g.p for another oestrogen product such as oestrogen only patches or gel. It can take a while to find the right HRT as it depends whether we absorb it very well or not. Also, you can ask for a natural progesterone oral capsule called Utrogestan and take that every evening to help prevent endo returning. I know it’s horrible and very scary but keep telling yourself this is hormonal and you will feel better soon. I’d really recommend (when you feel able to) looking at everything on balance-menopause.com as it’s excellent for up-to-date info on menopause and HRT. Hang in there as this will get better and post on here so we can support you through this xx
Oh my god if I could hug you I would I feel awful like I’m losing my mind I just keep crying I can’t rest and I can’t sleep I feel sick I don’t want to eat or drink it’s killing me I want to scream help me!!
I am on the max Lenzetto dose which is 3 sprays so I don’t know if I can up it especially with the supply shortage my pharmacist can’t even get hold of any I’ve had to pay £75 to buy it from an online pharmacy even with an nhs prescription!! I think you are right I’m so worried about it all I feel dark and if I can’t rest I’m only going to get worse.
I will definitely check that out but certainly need more as this isn’t enough as you say I might not be absorbing it. I thought about taking my old combined Femodette pill as well as the sprays as I used to be ok on that till the time of the month approaches however now I am in a worse state than before my surgeries I hate it I can’t stop crying and I’m so scared it’s like living in my pmdd state I even have the shakes.
Do you think I could try the femodette plus 3 sprays? I am only 35 and have osteoporosis so I am needing high oestrogen levels anyway but this definitely isn’t working for me I did ok for 2 weeks then bam it just all went wrong I do not know how to get out of this hole. I take sleeping pills which are not doing anything I have diazepam for my gastric issues but even that doesn’t do anything now which is very worrying.
I will try contacting my gp and see what they say I’ve written to my consultant but he isn’t really a hormone specialist and the hormones one has nearly 6 months wait which I will be dead by then if I carry on like this it’s devastating.
Thank you for being there as I’m so scared I honestly want to go to sleep and not wake up xx
I feel for you I really do. I was exactly the same a year ago and it hit me like a train. Everything you’ve said-couldn’t eat, couldn’t sleep, head was pounding with pressure, in tears constantly and felt like I couldn’t cope with the slightest thing. I thought I was having a nervous breakdown as I didn’t realise it was menopause. Nothing helped apart from getting some oestrogen into my system. Increase your spray anyway today as there are other HRT methods you can add into your regime- it doesn’t have to be gel or spray. It might be that you’re not absorbing the spray so please contact your g.p surgery and ask for an emergency appointment. Tell them how you feel and how serious it is and that it is because of not having enough oestrogen. Don’t let them fob you off with anti depressants because they don’t work. Ask for 2mg oestrogen tablets called Elleste Solo and 50mg oestrogen only patches. These are body identical oestrogen just like the spray. The tablet should start to get into your system within a few days and if you’re not very good at absorbing HRT through your skin (I’m not-some women just don’t absorb) this is the best thing to try initially. If that doesn’t help much at least you’ll already have some oestrogen patches ready to stick on. Please tell them how desperate you are and that you need to experiment with different HRT. You are very young and desperately need some oestrogen. We need oestrogen to make brain chemicals, which is why you feel so dreadful. Try calling the surgery now sweetie xx
Thank you that’s truly amazing advice!! For today I’ve just taken my Femodette along with the spray to see if that helps. I have also managed to order the others online well once it’s been approved hopefully I ordered the 100mcg patches as I thought that would give me more. It’s so confusing without any guidance from anyone it’s very scary I honestly feel so dark it’s horrible I had pmdd before so this is just scary as at least I knew that would end but now with the surgery I feel like I’m stuck suicidal. You have been amazing what combination do you use now? I think what you said about the 2mg pills and my spray will be a good start and hopefully the patches can be a back up as the surgery is closed just directs me to 111 so ordering online is the fastest I can get the meds so fingers crossed because I won’t cope long like this I’m exhausted and anything is tipping me over the edge destroying my recovery because I can’t rest and end up hurting myself more doing things I shouldn’t early in recovery.
It’s just hard to know what to do but you have been amazing honestly I was so close to the edge till I saw what you put!!!! I keep blaming myself it’s awful the panic attacks are horrific so I pray the extra oestrogen kicks in over the weekend to stop me losing my mind but that’s given me some hope at least.
So what’s the combination that you use? I will try the spray and pills as you said. The patches if I have to use them given I ordered the highest dose would I just use those on their own? Sorry for all the questions but I don’t know who else to ask.
Thank you again I will let you know if my order is approved and if anything helps I know it won’t be instant so I must try to keep calm which isn’t easy but if I get some sleep that will help a lot!! Thank you so much xx
I’m glad I’ve helped a little as I know how dark and scary it is. I was like it for 3 months solid prior to starting HRT and it was extremely traumatic. My g.p didn’t realise it was menopause either as they just don’t know about these symptoms. Be kind to yourself and just take one hour at a time. I laid on the sofa with my eyes closed just trying to get through it as I couldn’t function at all. I wasn’t sure what Femodette was so I had to just look it up. It has oestrogen in it so it won’t do you any harm to try it. 100mcg patches will be fine- your current 3 sprays are equivalent to a 75mcg patch (but you might not be absorbing it anyway). I’m still trying to find the right HRT for me as I don’t seem to absorb through my skin. I’m on the Elleste Solo tablet at the moment as that really helps but I need more oestrogen. Also on the progesterone capsule called Utrogestan. The Utrogestan can be mildly sedative and can help some women with insomnia. I think it relaxes me a little on an evening. I still feel anxious and low but nothing like as bad as I was a year ago. I so hope you find some relief very soon. Let me know xx
I’m sorry you are still struggling it’s just awful I have heard about people being given antidepressants but thankfully as mine is surgical and I’m 35 with osteoporosis they bloody know I need oestrogen so hopefully they will help once I can get hold of them. I didn’t even think about not absorbing it like you said so thank you as I couldn’t understand how the max dose wasn’t doing anything I will also about about the progesterone that you mentioned as the insomnia is killing me I’ve just been taking way too many sleeping pills currently on 4 which is not good as I don’t sleep even with that plus 2mg diazepam so I pray I can find a balance as all the surgeries have not helped my problems so I’m in way more pain than ever plus this awful menopause on top I feel like giving up however thanks to your suggestions I feel I will have some hope it will just take time to find what’s right and what’s acutely available to buy!!
Thank you again as it’s such a worry I thought I was going mqd this skin prickling and crawling it’s awful laying down I want to scream and cry at the same time!! I will use the femodette in the meantime as I have loads of that so might help till I get the oestrogen only things to add in. I will keep up the sprays as some might get into my system and hope for the best and hound my doctors when they are back after the bank holiday.
My body is really struggling so thank you for helping it has made a MASSIVE difference today so I cannot thank you enough!!!
I hope you manage to have a nice weekend I will update you if that’s ok you don’t have to reply but thank you again xx
Take care of yourself. At least you have a bit of a plan now and you can be reassured that the horrible symptoms you are experiencing are completely down to a lack of hormones. I was blaming myself for being weak and not being able to cope but it is all caused by not having hormones. Oestrogen is in every cell in our body so it affects every organ- hence why we can have so many random menopause symptoms. Once you get your oestrogen levels up look into starting testosterone too as this is also an essential hormone and is needed for brain and bone health. I had a surgical menopause too but my g.p didn’t click with my symptoms as I had a history of anxiety and depression. They don’t seem to recognise anything other than hot flushes as menopause symptoms! Diazepam didn’t do anything for me either. By the way you’re not on the highest dose of oestrogen- some women need a lot more than you’re on but the NHS are limited with the dose they can prescribe. It’s so wrong.Try some deep breathing exercises or a relaxation App. Hopefully the pill will get into your system soon x
Hello, I just wanted to let you know that I actually got some sleep last night which is a miracle so I can’t thank you enough!!! You know so much about the hormones do you work in that area? If not you should do as you have helped me way more than my gp or specialist has so thank you again!!! I know it’s just the first night but it makes such a difference I’ve been totally different today and that’s down to you so thank you I was seriously suicidal but you have given me hope and help. I’m so glad you replied to my post I don’t know what I would of done otherwise.
I will look into things more that you said as it seems we have to be armed these days to get any help especially your reassurance on the oestrogen not being the max as I was so worried about that and was seriously regretting the hysterectomy but now at least I know and taking action yesterday with a plan going forward will help me. I will see if the patches and pills get approved otherwise I will contact my gp, I will still do that but I know the waits for appointments these days and as you say on the hrt they are limited however hopefully my specialist can say I NEED more so they will action it. There is a menopause specialist I can see just a massive long wait around 6months and that’s privately shows how in demand hormones people are.
I hope you have a lovely weekend and thank you again xx
Oh, I’m so glad you got some sleep as it gives your body and mind a break from it all. I wonder if the Femodette has helped a bit. No, I don’t work in health care or anything! It’s more that I’ve had to figure it all out myself and learn as much as possible. I read lots of articles and listened to podcasts on the Balance-menopause website and that really helped me to understand what was happening to me. It also helped me to tackle the g.p etc as unfortunately I’ve learnt that we can’t rely on them to give the correct advice and treatment. They’re still scared of prescribing oestrogen HRT as there was a flawed study in 2002 that got a lot of attention and incorrectly demonised HRT. It’s since been found that oestrogen is essential for good health, it’s very safe and protective yet that hardly gets mentioned. It’s unbelievable in this day and age that women are just left to suffer when all they need is their hormones replenishing. Your story really resonated with me and I don’t want other women to suffer like I have. I wouldn’t be here now if I hadn’t started HRT and I know I’ll be on it forever. I’ve had to see a private menopause specialist as the NHS just couldn’t prescribe the doses I need. I have a video consultation with Newson Health and she writes to my g.p to advise on what I need so I can get the prescriptions on the NHS. Their waiting list is about 3 months. The best thing you can do though is learn as much as possible (although there’s a lot of misinformation out there) as it’ll pay off in the long-term. I realise lately that I’ve had a hormone imbalance or deficiency for many years but nobody ever mentioned a simple hormone check. Let me know how you’re getting on xx
Well I actually slept again!! I thought the previous night was a one off given how long I’ve gone without sleeping and they crawling skin horror in the night but I was so tired last night even when I did wake up for the toilet etc I was very dozy and went back to sleep. I am shocked will see how it goes……I wonder if I would be allowed to take Femodette with my oestrogen only spray in the eyes of the doctors given it’s licensed as a contraceptive but I can’t take any other combined pill hrt wise or progesterone only as we tried them all and with my pmdd they all set me off down a dark path and the progesterone in Femodette doesn’t exist in hrt form. I do have over a years worth of Femodette in stock as there was a shortage at one point so I was buying lots online and the gp accidentally prescribed me 6 months of it just before my hysterectomy.
I will contact the hormones specialist and get on his waiting list as that way I might not need him given the wait to see him but I will have him as a backup. I would hope they could prescribe me higher doses then licenced given my osteoporosis at such a young age I’ve had it since 2015 and only started the infusions to treat it last year due to being scared of the side effects.
Why did you struggle to get the 2mg Ellest solo surely that’s a standard prescription that your gp could of prescribed? I was given that whilst on Zoladex and it did help me a lot as I didn’t cope on the combined Ellest duet conti that was awful but oestrogen only I was fine however Zoladex is nothing like the real thing as I had to stop Zoladex due to the back pain I could barely walk on it.
Sounds like you have had a battle on your hands with hrt it’s such a shame I’m very worried about it given the length of time I will need to be on it but I will do what you said with lots of research and not let it get out of control like it had till I spoke to you I really just thought it was me not coping so I can’t thank you enough.
Do you mind me asking how old are you? Have you had a hysterectomy? Just when you said the dr didn’t recognise your menopause symptoms I thought they would know if it was via hysterectomy.
It is a worry with all the shortages at the moment I hope they get that sorted soon as I never thought about it till I couldn’t get hold of my prescriptions without having to pay a fortune online.
Hi, that’s so good that you slept well again. It confirms that you needed more oestrogen and that’s not surprising given your young age. Whilst it might be tempting to stay on Femodette it wouldn’t be the best for you in the long-term. It contains synthetic oestrogen and progesterone (not body identical) and there’s health risks with taking synthetic hormones. Also, there’s the risk of blood clots and the risk of a clot increases as we age anyway. The safest hormone replacement is transdermal body identical oestrogen (spray, gel or patches) & the progesterone capsule called Utrogestan. These are the gold standard in HRT and zero risk of blood clots. Obviously you’re already on the oestrogen spray so it’s a case of gradually increasing the dose and seeing if your symptoms improve. You could stay on your Femodette while you increase the spray. If you don’t see any improvements then you would need to switch to the oestrogen gel or patches and start the process again. Some women use a combination of methods, so you could stay on your spray and introduce patches or gel. It’s very much trial and error and takes time, which isn’t easy when we’re feeling so ill. I don’t absorb any of it through my skin and am on 4mg Elleste Solo at the moment. It doesn’t work fully but better then nothing. I can’t stay on it as nobody is willing to prescribe this dose, plus I need a higher dose than 4mg anyway. I’m 45 and when I was 40 I had everything removed apart from one ovary. I was sent off without any mention of HRT. The gynae just said that I might have a slightly earlier menopause-that was it! She was wrong-you still have a surgical menopause but not necessarily straight away. The blood supply to the ovary is removed and it fails anyway. In hindsight I realise that my remaining ovary started to fail within weeks of the surgery. I put my physical symptoms plus fatigue and depression down to the surgery and then to the fact that I was in pain everyday (the same as before the op). I somehow dragged myself through the next few years but spent a lot of time avoiding life. Then I started with terrible mood swings and I thought ‘this is hormonal’. My g.p prescribed the mini pill (no mention of menopause or HRT). I eventually asked for HRT but was only on it for 6 weeks as my gynae specialist tested my hormones, told me I wasn’t menopausal and to stop HRT. I believed the ‘expert’ advice and stopped HRT but she was very wrong. I now know that blood tests are a waste of time as oestrogen can be constantly fluctuating. I also had no idea then that gynae’s do not train in menopause or hormones.
Anyway, last year I suddenly fell very ill and couldn’t function at all for over 3 months. It was pure torture, I just wanted to die to end the suffering. My hormones had finally fallen off a cliff but I didn’t realise (as I’d been told I wasn’t menopausal & wasn’t even aware of these symptoms). I thought I was having a mental breakdown and the g.p prescribed antidepressants and diazepam. Neither worked. I then just happened to read an article online by Diane Danzebrink. She’d had a surgical menopause and I recognised the severe mental symptoms. I immediately started back on my oestrogen HRT and felt a bit of symptom relief after a few days.
Why doesn’t anyone tell us what symptoms to look out for? They only ever mention hot flushes. You’ve really got to be your own advocate and be prepared to fight for what you need to feel well again. Question and challenge everything. So sorry for another long post! I’m sure you’re on the right track to getting better so keep going with it xx
Never apologise for a long post it is your story and by the sounds of it this has been very traumatic for you and it’s actually good for others to see if they ever get my symptoms and search they will see your amazing advice and learn a lot like I have from you. I was spiralling so everything you have said it’s truly appreciated I’m just so sorry you had to suffer so much that sounds awful I can’t believe the doctors treated you like that I never knew they would send you away without hrt that’s crazy at 40!!!!
I understand what you mean about the femodette I will just see how things go till I see my specialist for a follow up after my surgery and tell him what’s happened as you say I might not be absorbing the spray however I did notice the pmdd feelings but I just thought it was me not coping with change given I was on the highest dose (so I thought) that there was nothing that could be done. My skin is a dodgy one after I had streptococcus in 2020 and pneumonia all my skin peeled off from the full body rash I got and I’m slightly nervous of the patches after trying the stop smoking ones years ago I ended up looking like a chess board from the rashes they gave me…..I’m also allergic to normal plasters my skin grows over them. Yes my body is very weird!! I can only give these things a try and see. Do you know how long we have to try something for before we know it isn’t right as I know things take time? I can’t up the spray too much as I can’t get hold of any and there is only 56 sprays per pump so on 3 per day that doesn’t even last 3 weeks!! It’s very worrying on that front finding something that works then it’s taken away my gynaecologist wanted me on the gel on 4 pumps to start off but that wasn’t available any where not even on line that’s he I got on the spray I had one pump then it became unavailable so I’ve been ordering online at £75 for 3 pumps.
It’s crazy that they won’t prescribe you what you need have you had a dexa scan…..just if you had some bone density loss through low oestrogen they would have to prescribe more as osteoporosis would cost them a lot more in the long run and I know it’s awful I broke all my ribs recently and broke my hip when I only had osteopenia so it’s horrible and if you could show something like that they would have to up it…..just a thought.
Thank you for sharing so much it’s very helpful and just sad that you have been through all that.
I hope you are ok and you can always message me Although you know a lot more than I do so I’m not much help but I can listen xx
Gosh, it sounds like the patches maybe wouldn’t be the best option for you. You’ve been through such a lot. Hopefully your specialist will be able to give you some good advice moving forward.
I’m able to get high doses of the oestrogen gel and patches prescribed but not the tablet, because oral HRT has a small risk of a blood clot. It’s ridiculous because I’ve no history of clots, don’t smoke and not overweight. There’s more risks with taking the contraceptive pill and I’m sure they’d prescribe me that again without any problems! I’ve had to say to them- “It’s an option between a small risk of a clot or suicide, so I’ll risk getting a clot”.
It’s crazy that we end up spending a fortune on private specialists and prescriptions when it should all be provided on the NHS.
You asked about how long you should try something for. I know it varies but I know within a week if something isn’t working as I go dramatically down hill. I can’t sleep, feel very anxious, low and suicidal again. I also have a worsening of hot flushes, night sweats, itchy skin, bladder problems, palpitations, head pressure and head vibrations. With your symptoms being so bad it doesn’t sound like the spray was doing anything for you. You’ll only know by increasing it but you’ll risk running out and there’s the increased cost. You could ask your g.p for both oestradiol tablets and oestrogen gel (although we know there’s a national shortage of some gel). That way you can try one and switch to the other if it’s not helping, without having to wait for another g.p appointment and prescription. You could explain that you don’t seem to be absorbing the spray and are really struggling so you’d like to try different options.
At least you’re able to sleep now and that brings some much needed relief x
Well I spoke a bit too soon on the sleep and things however it was more my guts and pain keeping me awake last night however I will be monitoring it the switch the the Ellest solo 2mg plus my sprays and see how that works. I had the patches order rejected as I stupidly put in currently on Lenzetto so they only prescribe what your already on but I forgot that 😞 will try another online one however as we said the patches might not be right away. Good it’s such a bloody mine field I hate it. I wonder why they don’t do hrt via injection like they give to women doing ivf they get hormone injections but I guess it’s too much work for the nhs just would be much easier for people like us as that way it’s all absorbed.
I also thought I have been in contact with a lady who works specifically with women who have had or planning a hysterectomy she covers everything from hormones to nutrition and physiotherapy. I found her on Instagram her contact is; thehysterectomycoach and her website is:
Hope that works. I had a free 1 hour call with her to discuss and I’ve booked up with her for all her online content and podcasts and 6 1to1 phone/zoom calls also she is always posting things on Instagram. She seems too good to be true but I’m glad I found her and she might be able to help you as she does specialise in surgical menopause etc she isn’t a dr but has been a physio for 20 years. Worth a look anyway and I can let you know how I get on with my calls and the online stuff to help if you like.
I have started getting spots on my chest this Morning too which isn’t a good sign. I’ve had this awful circulation since the surgery where my feet and calves start to burn up and throb bright red in the early hours it’s so weird it hurts to even stand up even walking around etc doesn’t do anything plus I’m pretty active so it’s not that but I really hate that like a hot flush but in my feet so strange.
Thank you again for all your advice and I hope you can get the higher doses you need. I would look into getting a dexa scan just as back up if you need it.
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